This day ten years ago we received a diagnosis of Prader Willi Syndrome for our baby who was just two weeks old at the time. It was a day spent in the depths of grief. Googling PWS but not wanting to actually see what this PWS thing was. Googling words like hyperphagia, scoliosis, sleep apneoa. Reading the long list of symptoms. Telling close family that we had an answer but needing to get our heads around it first. Typing in PWS Ireland but being too scared to actually click any links. Heart breaking sadness. Hugging The Lodger and promising him we'd make sure he would have an incredible life. I spent the day crying, holding my tiny baby and not really wanting to talk to anyone.
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| This boy is on fire! ;) |
This is how we spent our day ten years on!
7.30am - Get up, Get dressed. I haven't heard any sound from The Lodgers bedroom so I think he must be having one of his lie ons. I was wrong! When I open his door, there he is dressed and with a huge smile on his face. "Guess what I did Mum?", a quick glance around the room reveals nothing obvious... "I built the Playmobil castle dining room set all by myself with no help from you or anyone! I did it!" The smile says it all. Independent Achievement. A top start to his day.
8am - Breakfast time. As I make breakfast, The Lodger circles the kitchen island telling me one of his stories. We keep meaning to put a step counter on him. He must rack up 100s of steps before we sit down to eat. The Lodger loves to tell stories and his current favourite theme is all things Mer-people. My main aim is to pay attention to any mer-people themed questions that may come my way. He likes to triple check that I'm listening. There's no stress. He knows the routine, although he does keep an eye on me making sure I make his wheatabix to his exacting standards! Test passed, it's the best breakfast he's ever had. A hug for me and off he goes to put his wellies on.
8.30am- The Lodgers job during the summer is to feed our squad of animals. Cats x 3, dog x 1, ducks x 6, rooster x 1 and hens x 11. The Lodger is the leader and is supported by his little brother who really just adds a level of spontaneity. "O Mum, what do you think he'll do today? I hope he's just going to watch me and not do anything annoying." Today it turns out, the little brother got his wheel barrow and helped open the gates. No annoyance reported by The Lodger.
9am - Job done, so it's off to his room to play. The Lodger is organising all his Playmobil. It's a huge project but he is very focused on it. He's been collecting Playmobil since he was four, so has amassed alot, alot, alot of Playmobil. The Lodger will give me reports throughout the day, as to what he's completed. Airport done, school done, animal rescue centre done... the list goes on!
Little bro plays cars and makes jigsaws. I clean the house.
10.30am - It's snack time! The Lodger bounces into the kitchen to continue the rest of the story he was telling me this morning. Apple and rice cakes with peanut butter... " Mum, delicious snack. Thank you!" A quick check to see if I've finished my coffee "Mum, you enjoy your coffee and then we'll do my learning!"
He goes back to his room to play.
11am- Learning time with Mum. The Lodger knows to keep his brain active we need to do some learning over the summer break. Reading, handwriting, maths, art and brain games. He really misses school and finds the summer very long. The Lodger is praise driven, so he already can't wait to show his school team his summer learning when he returns... and maybe even surprise them with some new words learned. Stickers onto his Summer Learning Chart and off he goes.
Little bro got some Paw Patrol so myself and The Lodger could focus. A Sibling perk! The Lodger works best in a distraction free zone.
12.15pm: Time for a cycle. Up and down the driveway for 40 minutes, talking and cycling. Usually this is when he updates me about his own version of Harry Potter but today it's all about the cats birthday. Invites will be issued. "Mum, you better make a nice cat food lunch for her!" He then listed every cat he has ever known or heard of. The Lodger has an extraordinary long term memory. It's a PWS perk and curse!
Toilet break for The Lodger but at the back of my mind is the thought of him taking the opportunity to check out the kitchen, so I casually stay at the window glancing in. He doesn't even pause at the kitchen entrance but as a parent to a person with PWS.. you just never know.
Little bro cycles along with us today making hazards for The Lodger. Spontaneous fun! The Lodger mentions his new ten year old muscles are tired with twenty seconds to go. "Only twenty seconds left... I can do that!" Little bro cheers!
I'm reminded to undo his helmet clip with two hands, as the one time I did it with one hand YEARS ago, I accidentally pinched him. (PWS memory curse!) Two hands it is. No helmet removal incidents today.
1.15pm: Lunch time. We work to a fuzzy time schedule when it comes to all meals. Nothing is set to the clock. The Lodger knows meals will happen. He helps me gather the ingredients for lunch. He loves the process of making food. Tuna salad and pita today, a favourite of his. We have just general chat at the table. A catch up on our day. His little brother has a yoghurt, so The Lodger asks is it ok to go to his room, as he can't watch him eat it as he's finished his meal. In the last few months, Hyperphagia (uncontrollable hunger) has dialled up for The Lodger. He knows the best thing to do is to distract himself or remove himself from a food situation that is making him uncomfortable. Off to his room he goes to collect art materials for later.
Pause: he has returned to give me a hug as I'm the best Mum and maker of meals ever!
A quick glance at little bro "He really likes those yoghurts... they're not for me!" and off he goes singing!
2.45pm I asked Little bro if he was coming for a swim later. "Beach?" he asked. "Yes" I said. From down the corridor " You haven't asked me but my answer is yes!" The Lodgers ears are always open. He hears E V E R Y T H I N G!
3.15pm The Lodger has appeared from Playmobil World aka his bedroom to ask for some water. "Mum, it's not water to drink. It's water for my Playmobil aquarium/mer-people world". It's nearing afternoon snack time so there's a quick reminder to me not to forget. As an aside, in the last ten years I've never forgotten to feed The Lodger but this is part and parcel of living with PWS. Little reminders that the next meal is definitely happening.
He started with one bottle of water to fill. Now he's bringing two at a time to his room. Operating the kitchen sink tap by himself. It's little things like this that always make me think look how far he's come!
A little look at me to make sure I've spotted his use of the two bottles. Thumbs up given. He's beaming!
3.30pm It's afternoon snack time. "Mum, only one meal to go!" Again, a reminder that his day ends with dinner incase I forget. Banana and greek yoghurt today with a sprinkle of cinnamon. Water to drink. The inevitable joke. "Mum, I'm not going to drink my water. Don't look at me. Ok look at me, water gone!? Hahahaha, did I trick you?!"
A reminder to The Lodger that if he wants time for arts and crafts, he'll need to stop the Playmobil water mission in ten minutes. Timer set. Transitioning from activities is tough for The Lodger. He needs a few minutes notice that there's something new happening. Timers are frequently set in our home and verbal reminder cues are just part of the everyday.
Post arrives. A hospital appointment for The Lodger. Plans made for a Little bro minder. The Lodger will love a hospital visit but he won't know about it until the evening before. New beach tent also arrives. Great excitement about trying it out later. Little bro insists on putting it up now. There are times to negotiate with a two year old. This is not one of them. The Lodger doesn't want to see it until it's on the beach. He's walking by with his eyes closed.
The Lodger dries up some water spillage in the kitchen. It's the little things!
4.10pm Arts and Crafts time. It's The Lodgers reward, so he gets to be the leader teaching me what to do. The set up process takes time, so a new timer is set. A miracle has happened and the set up is finished before the timer buzzes. We have a lesson on how to stop a timer mid way through being a timer.
I should've guessed the theme of todays arts and crafts. Of course it would be making a crown, necklace and red carpet for the Queen of Wednesday aka the cat whose birthday it will be. I get a hug because I was really brilliant at following his instructions.
5.15pm It's dinner time. It's an early dinner that's just for The Lodger and Little bro as we want to go swimming. Usually we always eat together. The Lodger is cool with it as long as I assure him that myself and Dad will be having dinner later when he's in bed. Little bro is digging in the garden and doesn't want dinner. This is baffling to The Lodger. "How could he not want dinner. It makes no sense to me!"
5.40pm I take a deep breath and let The Lodger know there's been a change of plan and we aren't going swimming now. "Why?" asks The Lodger, "Dad has a meeting,". "Ok, what will I do now, more art?" "Yes, great idea!"
It's impossible to know how a change will be accepted. This right here is a win!
"O, Mum, isn't this funny. An early dinner for no reason!"
"O I just need to hug Dad. Goodnight I mean Congrats on your new job, Boss Dad!"
6pm Dad has been asked to help him stick a poster about the cats birthday on the gate.
Poster hung up. He's back inside again putting paper scraps into the recycling bin. It's the little things but this is actually a big thing as The Lodger struggled for years with throwing things out. Knowing that everything gets turned into something new has helped him accept it.
The 'how to host a cats birthday cookbook' is now being made. "Mum, you have to make the cat cake exactly as the book says... ok?" he says to me with a knowing look.
I've been here before, negotiating a Lodger created recipe of gherkin muffins for his Dad's birthday. Attempting to adjust the ingredients list to make them edible. "Mum, do you think Gordon Ramsey has people change his recipes? Just please help me to make them like what I've written, please Mum!" It was a morning of anguish for both of us. Negotiations made. Lines drawn. Agreement eventually reached. Morning snack gherkin muffins eaten. The verdict: not as bad as you might think.
There's some battles I choose but this one, the cats birthday cake one I just smile, nod and agree to.
6.30pm Tidy up time for The Lodger. He's getting the wellies back on to check the outside decorations for the cats birthday party. I've planted a seed of thought with him that if it rains I can help re-make everything. This is met with laughter like I've said the most ridiculous thing ever but the seed is planted, that's the important thing.
He's off to get into his Pjs. The Lodger loves going to bed. He'll have his growth hormone injection and off to the land of nod he goes. He's had approx 2500 injections, one every night from just after his 3rd birthday. It's such a normal part of our life, we don't really think about it.
Little bro occasionally asks "Me too?" which is met with a "You don't have PWS. What is he like?!" from The Lodger.
7pm It's a goodnight from The Lodger. "Tuesday tomorrow Mum, just one day to go then its the cats birthday! Don't forget!"
So there you go. A decade in. A milestone. It feels monumental. I'm a broken record saying the next two things but I do wish I could go back and tell myself that yes, life will be different from what you thought but it will still be amazing because your child with PWS is amazing.
And of course that the future is bright!
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